Guitar in hand, Hugo Campos launches into a variation of the classic protest song “It Isn't Nice” by Malvina Reynolds. Not a professional singer, his voice is nonetheless calm, not self-effacing, “That's not right / I've told you twice / It isn't nice, it isn't nice...”
But Hugo is talking about the usual civil rights issue. He's talking about access (actually the lack of) when it comes to data in his implanted medical device. A few years ago, Campos was given an implantable cardioverter-defibrillator (ICD), in response to a genetic heart defect. The device is able to wirelessly transmit data about itself as well as Campos' heart condition. The problem for Campos, one that he's been fighting for over two years, is that these updates bypass him entirely. If Campos wants any access to his data he has to make arrangements with his doctor.
Campos has joined a growing number of “e-patients” who are pushing for more transparency when it comes to the information that their medical devices are transmitting. Device manufacturers say that the difficulty in doing this comes in translating the data into something that patients can easily understand. But in an interview with NPR, Campos refutes this, "Whether I can make sense of it or not, it's another problem. I should be allowed at least to have a chance to look at this data and see if I can make sense of it."
According to Campos' YouTube video, hundreds of thousands of patients all over the world receive ICDs, pacemakers, and loop recorders every year. The question then is where does one draw the line between what information a patient should have access to, particularly if a device is implanted in their body? Device makers might argue that medical devices should be restricted in the same way as iPhones, game consoles, or other electronics that deny consumers access to their deep, inner workings. But, then again, a device like a ICD is much more invasive than a cell phone and is essentially a de facto part of the body once implanted.